Burning and Freezing - Erythromelalgia and Raynaud's Post COVID with Pictures

In my last post I discussed how I experienced erythromelalgia, Raynaud’s, severe migraines, brain fog, and tinnitus after having a very mild bout of COVID in early 2020. If you missed that post and want to go back and read it, click here. This time, I’m including the long-promised photographic documentation of my absolutely gorgeous lobster-red and ghost-white tootsies. Let’s call them “COVID Tootsies,” shall we? Because what manifested was essentially “COVID Toes” of my feet and hands, a bizarre and painful experience that had me doused up to my ankles and wrists in alternating (or sometimes combo, as you can see in the first two photos) burning red and burning white vascular abnormalities. Yes, “burning white" is a thing. Just ask anybody with Raynaud’s.

I trialed a bazillion supplements and treatments and diets and a few medications and saw half a dozen medical professionals (including a trip to University of Washington Rheumatology) when I was deep in the process of attempting to cure myself of these troublesome syndromes. And none of them worked. Zero. If anything, everything I trialed made the condition worse or resulted in side effects that were worse than the condition itself (this was the case with both venlafaxine and antihistamines). And though I did gain some insight from medical professionals, which I will share in the next blog post, it didn’t amount to anything I couldn’t learn through my own research.

This is not to say that some of these treatments won’t help you if you are experiencing similar symptoms after having COVID, or after receiving the COVID vaccine, or after recovering from another virus (vascular abnormalities can sometimes crop up after herpes, Epstein Barre, meningitis, and other infections, as well as after receiving some vaccinations). It’s totally possible the supplements and medications I trialed benefited me in other ways I was not aware of. But in many cases, I purchased supplements based on the advice of practitioners (naturopaths, functional medicine doctors, etc.) who were themselves selling these products, and now I wish I had done something more productive with the thousands of dollars I spent.

So, if you came across this post because you’re searching for solutions or information for your erythromelalgia or Raynaud’s symptoms, consider the following list before you order a bunch of supplements or pay a health practitioner a ton of money to treat you for something like mold toxicity to address lingering issues related to COVID.

Here’s what I trialed (in earnest) between 2020 and 2024:

Supplements/Herbs:

  • Amino acids, such as Arginine, Citrulline, Acetyl-L-Carnitine, L-Theanine, Tryptophan

  • Alpha-Lipoic Acid

  • Coenzyme Q10

  • Magnesium (high dose, various forms)

  • Quercetin (high dose)

  • N-Acetylcysteine (NAC)

  • Nicotinamide Adenine Dinucleotide (NAD)

  • Probiotics

  • Curcumin

  • Boswellia

  • Berberine

  • Melatonin

  • Creatine

  • Pycnogenol

  • Resveratrol

  • Nattokinase, Serrapeptase

  • Red Rice Yeast

  • B-Vitamins, especially B12 (high dose) and Niacin/Niacinamide

  • Vitamin D (high dose)

  • Vitamin C (high dose)

  • Zinc, Copper, Iron

  • Multivitamins formulated specifically for Long Covid

  • Omega-3 Fatty Acids (EPA/DHA)

  • Evening Primrose Oil

  • Black Sesame Oil

  • Beet Juice Extract

  • Brown Sea Kelp Extract

  • Lion’s Mane, Turkey Tail, Reishi, and other medicinal mushrooms

  • Ginkgo Biloba

  • Red Sage

  • Feverfew

  • White Willow

  • Rosemary

  • Parsley

Medications:

  • Low-Dose Naltrexone (LDN)

  • Antihistamines (Loratadine, Cetirizine, Diphenhydramine)

  • Cromolyn Sodium (a mast cell stabilizer)

  • Nifedipine

  • Venlafaxine

  • Lidocaine (prescription strength patches)

  • Valtrex

  • Thyroid (levothyroxine)

  • Aspirin

Lifestyle-based Therapies:

  • Heat desensitization (e.g., “Bob’s Protocol”)

  • Cold showers

  • Intermittent fasting

  • Low-histamine diet

  • Ketogenic diet

  • Medical Medium (and associated diet)

  • High protein/low carb diet

  • High-intensity cardio exercise

  • Dr. Sarno Method

  • Curable app

Other Therapies:

  • Donating blood

  • Hyperbaric oxygen therapy (HBOT)

  • Acupuncture, massage, chiropractic, and craniosacral therapies

And I was tested for…

  • MCAS

  • Mold toxicity

  • Hormone imbalances

  • Epstein Barr

  • Autoimmune diseases

  • Nutritional deficiencies

  • Peripheral neuropathy

  • SCN9A gene associated with primary (inherited) erythromelalgia and peripheral neuropathy

  • Factor V Leiden

  • Venous insufficiency

Again, though I’m sure I benefited in some way from some of the above listed items (even if only from an educational standpoint), none made any measurable difference in terms of lessening my main symptoms: erythromelalgia, Raynaud’s, severe migraines, brain fog, and tinnitus. Some actually made things much worse. Venlafaxine, for example, gave me frightening migraines and was extremely hard to detox from. Want to know what has helped? I’ll be discussing that in my next post. Please stay tuned and leave a comment if you liked reading this post or you’re in the same boat post-COVID.